In the year 1993, I spread a map across the sunken living room of our
co-op apartment in Forest Hills, Queens, and marked a bull’s-eye at
Grand Central Terminal, where trains come in from the ’burbs. I
drew a circle of fifty-mile's radius around the spot, and spent the
next three months searching, with my husband, Mark, for a house inside the curve.
We sought top-rated schools for our two little boys,
proximity to a train on direct route to Manhattan, and an ample yard.
One weekend we toured the toy-town streets of Millburn, New Jersey,
the next, the wide-rolling lawns of the Long Island town Dix Hills. As
chance would have it, we ended our hunt at the most devastatingly beautiful
of spots, a winding country road abutting a spruce forest in the
tony suburban hamlet of Chappaqua, in Westchester County, New York.
It would be the biggest mistake of our lives. If only we’d known how
infected we’d get living on that land and how much skepticism we would
face from the local schools and doctors, if only we’d understood that we,
ourselves, would be the bull’s-eye, we never would have left Queens. But
hindsight is 20/20. At the time, the move to Chappaqua seemed like the
answer to our dreams.
Hailing from the hills of Brentwood in Los Angeles, Mark had come of
age in the fifties and sixties, atop a canyon, with miles of wooded nature
spread out before him and the twinkling lights of the city beckoning below.
My background was less lofty, but not less intense. While Mark was
running in those hills, I was growing up in the low-income housing projects
of East New York, Brooklyn, where I shared a claustrophobic room with
my kid brother, Alan, and hung out with friends on dicey city streets. I
spent my childhood playing tag in the stairwells and scraping my knees on
concrete, all the while dreaming of the lush lawns and deep driveways I’d
seen only on television, in Leave It to Beaver and Donna Reed.
Fast forward to the eighties. After college and then graduate school in
journalism, I moved to Manhattan and, after a few years building my
portfolio, was hired as staff writer on the new science magazine, Discover.
Mark was finishing an M.F.A. in fiction writing at Columbia
when we met in a workshop at the 92nd Street Y. By 1990, we were
married and living in Forest Hills with our two little boys. We made our
way as writers, specializing mostly in health and science stories for the
national magazines in New York.
Thinking back, those long-ago happy days feel like a dream. Blessed
with the flexibility of writers, we had abundant time to spend together
with our boys. We read books, spent hours at the park, vacationed at the
shore, saw movies and friends. It was a rich, creative, fascinating life—it
should have been enough. But I longed for that lawn and driveway, and
Mark wanted a return to the wide-open nature of his youth, with room
for our boys to run.
Chappaqua fit the bill. Countrified in appearance, it was nonetheless
urban in sensibility owing to an influx of professionals from Manhattan.
It was an easy commute to the city, with a school system so stellar that
15 percent of graduates went on to Ivy League schools. In Chappaqua
you could find a taxi company run exclusively for children and a health
food store whose work-for-hire clerk knew as much about supplements
as a nutritionist with a Ph.D. The hamlet’s compact main drag was a
potpourri of gourmet food, real estate agencies, and antiques, all of it
anchored by a Starbucks—a nod to the fact that, underneath all the
haute, it was really a brand-name town.
Chappaqua had a way of attracting attention and getting into the
news. Whether it was the high school football team partying with a stripper
(at an event hosted by one of the fathers) or a Little League coach
breaking an umpire’s arm, if it happened in Chappaqua it was reported
nationwide. When the Clintons vacated the White House, they followed
our lead and moved to Chappaqua, a mere two blocks away from us. The
day they arrived, reporters chased me down my driveway for quotes.
Chappaqua was one of those ubersuburbs where homes segue into
forests, rock faces, and fish-filled ponds: The modest raised ranch we
bought was no exception. Our front yard, a tangle of lofty pines, led
down to a towering spruce woods out back. A fairy-tale forest that
stretched beyond our view, those woods provided haven for an abundance
of wildlife, including squirrels, skunks, raccoons, white-footed
mice, and deer. Residing in one of about two dozen houses that ringed
this wonderland, we felt privileged to own a piece of it.
For years, from the time we moved there in late summer of 1993, our
children spent carefree days in the woods. Along with their friends, they
constructed a fort, an arboreal Rube Goldberg made of moist,
leafy branches and decaying logs. The contraption was well-stocked
with plastic action figures and draped, haphazardly, by a tarpaulin cloth.
At the edge of the forest, just where the woods gave way to our backyard
lawn, we hung a swing from the branch of a tree.
Watching my children play in the shadow of the woods, I passed the
time plunging my fingers into the dark brown soil of the rolling backyard
lawn, easing out crabgrass by the roots. Mark tended the autumn
leaves, gathering them with a rake, piling them onto a drop cloth, and
dragging them out to a pile of mulch deep in the backyard woods. My
home office overlooked the forest, and often, as I wrote, I glimpsed deer,
usually in groups, traipsing past my window and traversing one part of
our property to the next. For a city girl from Brooklyn, it was an otherworldy
scene.
Sure, we sometimes thought of Lyme disease. Everyone knew you
could get it in Westchester County, especially the forested sections home
to deer. But for us, it wasn’t of great concern. As health and medical
journalists, we had investigated the risk before purchasing our house.
What we read in the popular press and, especially, in the major scientific
journals, put our minds at ease.
One study, published in the Journal of the American Medical Association
in April 1993, called Lyme mild and curable, except in the rarest
of cases. Those who didn’t respond to treatment for Lyme disease usually
didn’t have it, said Dr. Allen Steere, who’d studied the very first patients
in Old Lyme, Connecticut, while working at Yale.
How, then, to explain a tinge of worry expressed by some of our
friends when they came to our home? That, too, was clarified by experts,
this time in a June 1993 issue of Science, a journal I read every week. The
article, titled “The biological and social phenomenon of Lyme disease,”
invoked the specter of a strange new phobia gripping the suburbs, reminding
me of the irrational fear of witches in generations past. Otherwise
normal, intelligent people were paralyzed by fear of infection, an
edginess only heightened because the young nymphal ticks spreading
Lyme were so tiny they couldn’t easily be seen. The real disease was fear,
the Science authors said. What a pity, they lamented, that irrational fear
of a disease, especially one so mild and treatable, had sparked “a negativity
toward deer” and “a new sense of conflict between humans and nature”
in “some of the most desirable residential areas of the Northeast.”
Reading the Science article, I got the impression I was surrounded by a
secret cult of Bambi-haters—folks I had yet to meet—who could ruin the
value of my hard-earned Chappaqua house with their paranoid, hysterical
talk. The Science authors placed the blame squarely on the backs of patient
support groups and their leaders—misinformed advocates with missionary
zeal, who spread nightmare stories of a progressive, incurable infection
driving overwhelming fatigue, disabling pain, and devastating psychiatric
disease. These claimants suffered not from chronic Lyme disease, the scientists
wrote, but rather, from “premorbid personality” and the “tendency
to somatization,” which meant they experienced even the mildest or most
ordinary of symptoms with the heightened perception of pain.
What more did I need to know? A new resident in the forested suburb
of Chappaqua, I could add Lyme disease to my list of nonworries—it
was hard to catch but easy to recognize and treat, so that if you actually
became infected, you could be swiftly and completely cured. And all the
noise about Lyme disease? It came from a small group of malcontents,
I decided, a club of the disordered or exceptionally neurotic, those attracted
to the idea of sickness or looking for some excuse.
Though I didn’t know it at the time, scientists had long since chronicled
the devastating neuropsychiatric fallout sometimes seen when Lyme
disease went untreated for months and years. I would have had to dig
deeper for those reports—but why would I? Not one to dwell on disease
unless forced to, I put worry aside.
It’s easy to see why we had such a cavalier, even reckless, attitude toward
the environment, and why, at first, we chalked Jason’s flu, cough,
and joint aches up to ordinary childhood ills. Our pediatricians at the
Mount Kisco Medical Group, northern Westchester’s largest medical
practice, said all of it was routine. We were concerned in 1995, with the
onset of shooting pains through Jason’s arms and legs, but the doctors
said these “growing pains” were normal. By 1996, in the sixth grade,
Jason’s knees had become so swollen and achy he could not climb steps,
and the middle school, responding to a note from our pediatrician, gave
him a coveted key for the elevator earmarked for handicapped students.
With his knees in so much pain, Jason had to give up the vaunted position
he’d earned on the Chappaqua traveling basketball team because he
could no longer run. Perhaps such swollen knees should have been a
tip-off to Lyme disease—but the doctor who wrote the note seemed
blithely unaware. As time passed, pain manifested as well in Jason’s elbow.
We went to a doctor billed as the top elbow expert in Manhattan,
who performed an MRI and could find nothing wrong. Along with
these joint problems our boy experienced increasing fatigue, so that
sometimes he could barely get up in the morning and out of the house
unless we physically dragged him and even dressed him. The head of
pediatric rheumatology at the Hospital for Special Surgery reviewed the
case and told us it was probably parvovirus, an illness that is usually
benign. Tylenol was the therapy he thought to recommend.
By 1997, Jason had suffered a heart irregularity his pediatrician and a
consulting cardiologist could not explain and advised us to ignore. He underwent
a seizurelike incident that caused his eyes to roll back in his head
as he stumbled around his classroom and ultimately passed out. A pediatric
neurologist at New York University, herself a resident of Westchester
who knew just where we lived, told us this incident was probably a “migraine
aura,” experienced by boys who had migraines without the pain.
Unless it happened again, we needn’t be concerned, she said. By early
1998, Jason’s knee and elbow pains had intensified, and traveled from
joint to joint. Though traveling joint pain is a classic sign of Lyme disease,
neither our pediatricians nor the Manhattan specialists we consulted
viewed Lyme as a probable cause.
The reason they dismissed the Lyme diagnosis, of course, had to do
with the tests. In the course of these events Jason was, naturally, tested for
Lyme disease a number of times. But each time his test came back “negative.”
A negative test, our doctors told us, meant Lyme disease had been
excluded as a diagnosis—even though our house bordered a forest that
was home to ticks, field mice, and deer. It was only later I realized that the
tests contained mounting evidence for Lyme in the form of specific Western
blot bands that increased over time. The CDC required five of ten
bands, each representing an antibody against the spirochete, for an absolute
positive—but changing band patterns offered evidence of active,
morphing infection as well. Jason had 3 bands in 1995, 4 in 1997, and
then, finally, in the year 2000, on a test done at LabCorp, the unequivocal
8. If only our doctors had tracked our boy’s pattern of antibody
bands, they might have seen the evidence. If only they’d viewed the test
results in the context of our backyard woods and Jason’s swollen joints
and other signs and symptoms, they might have seen the light.
But missing out on the chance to treat Lyme disease in these early
years paled beside what happened next. I will never forget that October
day in 1998 when Lyme disease announced itself loudly, indisputably,
across Jason’s torso with what any physician should have recognized as
its hallmark—a large red rash with spaces of white clearing, called an
erythema migrans and published widely in medical texts. Unnerved at
the look of the huge, mottled rash—something I now realize must have
come from a recent tick bite—I called the Mount Kisco Medical Group,
described it in detail, and suggested I bring Jason in.
“Don’t bother coming,” I was told by a senior member of the nursing
staff, on phone duty in the pediatric department that day. Since I couldn’t
see a literal bull’s-eye, she assured me, it couldn’t be Lyme disease.
That’s when Jason came down with what I call his “great flu”: a
fever, cold, hacking cough, and deep exhaustion that caused him to miss
two full weeks of school. Slowly the “flu” went away, but Jason never
got well. He now had pain that traveled around his body from joint to
joint, constant headache and stomachache, a hacking cough, and inexplicable
insomnia and fatigue. His neck hurt so much that sometimes he
could not lift his head from his pillow for days. He dropped from all his
sports activities—they were simply too exhausting for him. He stopped
doing his homework. He refused to see friends, even his two best friends.
On more and more days he could not get up for school.
Despite the swollen joints and the rash, our pediatrician at the Mount
Kisco Medical Group resisted running any more blood tests for Lyme
disease. Jason just had too many symptoms now, he explained to me,
while Lyme was limited to just a few. To emphasize his expertise he told
me he had trained in seminars at Yale.
As Jason continued his alarming decline over the next year and a half
and as we fruitlessly sought an explanation, the diagnosis our pediatrician
came to favor was depression. One day, some time after Jason had
stopped going to school regularly, the pediatrician took him into a private
room and encouraged him to talk about his life at home. After ten
minutes of chat, the doctor emerged from the room and said, “It seems
he argues with his father. This could be the reason he feels so ill. You had
better do something about it,” he warned me, “because if he doesn’t
start going to school he’s going to be held back.”
No, he would not do a blood test for Lyme disease, he said again. Instead,
he urged us to find psychiatric help and sent us on our way.
We were fortunate because the psychiatrist we found, a renowned expert
in his own right though with little knowledge of Lyme disease, did
not buy into the “psychiatric” diagnosis. In fact, our psychiatrist had
never seen a psychiatric illness like this in thirty years—and why was a
pediatrician diagnosing psychiatric disease without any training, and
without having completed a full battery of medical tests?
Outraged, the psychiatrist phoned the pediatrician to demand that he
be more thorough. And so the pediatrician, finally, reluctantly, drew fourteen
vials of blood. “We are testing for every disorder possible, just to
make you feel better,” he assured us at the time. Just to placate us, he even
tested for Lyme disease. (Despite the fourteen vials, he would not, I later
learned, test for the tick-borne coinfections ehrlichiosis and babesiosis,
one prevalent in Westchester County and the other found commonly on
Cape Cod and Eastern Long Island, where we’d spent summers and vacationed
many times over the years.)
Even so, at last we hit bingo. In February 2000, Jason finally tipped
the scales for Lyme disease on a Western blot, a test for detecting targeted
antibodies in blood. To validate a case as late Lyme disease, the
CDC required the blot detect five of ten specific antibodies formed to
fight the spirochete. And, in what I will always consider a gift from the
gods, Jason had eight. The laboratory, LabCorp, duly reported his case
to the CDC, but even then, the pediatrician would not concede that Jason
definitely had Lyme disease.
Instead, he sent him on to the head of infectious disease at Northern
Westchester Hospital, Peter Welch, known for his view that Lyme disease
was vastly overdiagnosed. Welch nonetheless told us that Jason had slipped
through the cracks and was a bona fide case of late-stage, disseminated
Lyme disease, meriting a month of intravenous Rocephin, the big-gun antibiotic
for Lyme in the brain. Welch’s Lyme disease diagnosis was something
for which we would always be grateful. With so many Lyme patients
relegated to the gray zone, we found the Welch imprimatur a valuable
commodity when dealing with our insurance company and other M.D.s.
Getting the diagnosis from such a skeptic was convincing to us, as well.
When Jason was sicker than ever at the end of the treatment, Welch
said that it might take a while for the treatment to work. But if Jason
didn’t get better, if the treatment didn’t work, he warned us, then whatever
was ailing him wasn’t actually Lyme disease, after all. As weeks
passed, as Jason’s illness only worsened, Welch’s ominous words came
home to roost. In due course, the diagnosis of “Lyme” was revoked and
Welch sent us packing. Back at the Mount Kisco Medical Group, the pediatrician
(along with a neurologist he’d brought onboard) returned to
psychiatric theories for Jason’s ills.
Too sick to go to school and too confused to do his schoolwork, Jason
was immobilized by his brain fog and pain. But what psychic switch
had been flipped to prevent our former basketball star and straight-A
student from standing or even sitting up in bed; from focusing enough to
read a paragraph, let alone a page? What caused him to writhe in pain
whenever anyone jostled him, to demand near-darkness before opening
his eyes, or to appear so twisted and bent? This “psychiatric disorder”
had no name, and could not be found in DSM-IV, psychiatry’s diagnostic
bible. Nor could it be validated by our psychiatrist, a university scientist
who remained skeptical of these doctors to the end.
We managed to obtain a prescription for an additional four weeks of
Rocephin from another, more open-minded physician—Daniel Cameron,
a good-humored, kind-hearted Mount Kisco epidemiologist-turnedfamily-
practitioner who saw merit in longer treatment. But in April 2000,
after the extra treatment had run its course, Jason was so disabled he
could no longer walk. I pondered what to do next. Now wracked by so
much pain he could barely sit up, he spent most of each day lying in the
bathtub, generally half-asleep, running hot water from the faucet so that
it filled the room with a thick gray fog. The soothing water and steam offered
the only relief from agony he could find. I kept constant watch over
him for fear he could lose consciousness, slip underwater, and drown.
The bathroom reflected the state of our lives: The mirror, the countertops,
the floor were coated with mist. The hot steam made the drywall crack so
plumbing was visible, and caused tiles to blister off the floor. The streaming
bathwater created a backdrop of sound, like a white noise machine
with the dial set somewhere between “waterfall” and “rain.”
As the water ran and Jason lolled back in the bath, I phoned the
Mount Kisco neurologist in one last-ditch plea for help. Had he ever seen
this kind of thing? What could it be? “I can’t tell you what it is,” he said
tersely, “but one thing I can tell you is that if he’s still sick after two
months of Rocephin, it’s not Lyme disease.”
“Should I put him in the hospital?” I asked.
“That’s entirely up to
you,” he said, before quickly excusing himself, and hanging up the
phone.